- Patient care access and cost of care are considerable concerns for patients with muscular dystrophy and their family caregivers, with nearly half of patients saying cost is a major care access barrier, according to the ONEVoice survey from the Muscular Dystrophy Association (MDA).
“MDA is committed to transforming the lives of people with neuromuscular disease and we believe the ONEVoice study moves us one step closer to our objectives,” MDA president and CEO Lynn O’Connor Vos said in a statement. “We are in a position to facilitate this transformation, through MDA's national network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions, our multimillion-dollar commitment to research and programs to enrich patients' lives.”
The survey of about 2,500 patients with MD and just under 1,000 of their family caregivers revealed that patients need more support in their own care. Specifically, patients need tools to make it easier for them to access treatment.
On the whole, 82 percent of patients said high costs were a barrier to their care access, with 51 percent saying cost was a major concern and 31 percent saying it was a minor concern.
What’s more, one-in-three family caregiver respondents said their loved ones had skipped out on or delayed treatment because of high costs.
Cost barriers affect patients of all socioeconomic status, the report continued. Fifty-five percent of patients making less than $25 thousand annually said cost was an access barrier, compared to 44 percent of patients making more than $100 thousand annually saying the same.
Respondents also cited issues with accessing specialized care. Seventy-six percent of respondents said they had concerns about access to a medical provider with specialized experience in neuromuscular disease. This concern is pronounced in rural areas, where access to primary care is difficult, never mind access to specialty care.
Specifically, patients feel the stress of specialized care access in Arkansas, Nevada, Kentucky, Alabama, and Georgia.
Telehealth presents one opportunity for closing those care access gaps, the researchers said, although the technology is not heavily utilized. Only 20 percent of respondents said they feel informed about telehealth, while one-in-three respondents said telehealth access is a major concern.
Low-income patients were more likely to report that access to and knowledge of telehealth technology was a barrier.
Patients are also struggling to access and understand the specialized procedures that could improve their specific health conditions causing muscular dystrophy. For example, 29 percent of patients said they had not had their diagnoses confirmed using genetic testing, while the researchers said interest in doing so is strong.
Again, cost served as a deterrent to accessing genetic testing. Forty-nine percent of respondents said genetic testing was too expensive. Twenty-two percent of patients who had not received genetic testing said their insurance companies would not cover the cost.
This comes despite the value genetic testing has in understanding muscular dystrophy and other comorbidities, the researchers said.
“Genetic testing is not only used to confirm a diagnosis but also can help predict disease course, inform recurrence risk, and facilitate enrollment into clinical trials,” they wrote in a report.
Patients also need more information about clinical trials, the survey revealed. Lack of knowledge about a clinical trial was rated as the top barrier to participation. Specifically, patients said they had not been asked to be in a clinical trial or did not know a clinical trial was occurring. These results were more pronounced with lower-income patients with lower levels of educational attainment.
“Given the degree to which patients and caregivers rely on medical providers for information and advice around clinical trials, it is important for providers to have this information available and accessible in a variety of formats, particularly for older and low-literacy populations,” the report authors noted.
Healthcare professionals can utilize or direct patients to clinical trial finders, the survey authors recommended. Additionally, partnerships between patient advocacy groups such as MDA and providers can give clinics the tools necessary to drive patient education about clinical trials.
Further research is needed to understand patient-provider communication about clinical trials, the researchers noted. Deeper surveying into this topic can help pinpoint improvement areas for clinicians treating patients with muscular dystrophy.
“The ONEVoice study also found that the neuromuscular disease community is eager for information and counts on MDA to fill this need,” Vos concluded. “This survey is part of our continued commitment to engaging our community and doing our utmost to transform the lives of neuromuscular patients and their families.”